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Diagnosed at 39 with Stage IV IDC breast cancer, grade 2, metastatic to the liver, and ER/PR+ and Her2-negative.

Saturday, October 11, 2014

October 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

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And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

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